3 appointments and counting…

Posted on 08-09-2009

8Sep

It’s probably about time that I told you a bit more about the appointments that I’ve had so far at Selly Oak hospital. I’ve had three, in three consecutive weeks. I cannot explain how pleased I am about this. At my local hospital I used to have to wait months for an appointment at a time and even then, they couldn’t seem to send me away happy so within a week of my very first meeting with the CI team, I had another appointment for just a week later to attend!

So top marks for efficiency indeed.

My first appointment was on Wednesday 19th August 2009 and it was basically a meeting with the CI team to discuss my situation, and initiate the investigating suitability process. Naturally the very first thing I had to do when I stepped through the doors was was to have a hearing test.

You’d think I would be used to hearing tests by now seeing as I have had them all my life. I used to really enjoy them as a small child as it meant lots of praise as I put another block in the box. But as I got older, the hearing tests got harder and involved the pressing of a button on a cable with a remote type thing whenever I heard something which was boring and tedious. I also started to realise that the long gaps between hearing one beep, and the next meant that there was something I wasn’t hearing and these gaps got more frequent. I never know what to do in these awkward moments. Do I turn my head? Has she finished with the test? Or do I carry on listening hard and staring at the floor with concentration waiting for the next beeeep and risk feeling a tad silly if I eventually get a tap on my shoulder that the test has indeed finished?

I’m not a huge fan of them anyway due to the effect they have on the dreaded Tinnitus. Unfortunately my Tinnitus is worse when I don’t have my hearing aid in, and can be triggered by sudden and isolated noises which you get in a hearing test. This often means that differentiating between the long beeps of the test and the Tinnitus is hard and I never know just quite how accurate the test is going to be. My results are always pretty much the same though, so I must be getting it right somewhere.

After the complimentary hearing test, I had to do something new. This was interesting, a speech recognition program! It basically consisted of a computer speaking at me and in the optimal environment (quiet room, no background noise) I had to listen and try to understand as much as I could what the computer was saying with my hearing aid only but without any kind of lip pattern to assist me. I didn’t get any of it at first, but as I got used to the voice and the type of sentences the computer was saying (“Good Morning” and “The Lady left the room” for example) I soon got the hang of it and I understand that I got 42% of the sentences correct. The criteria cut off is over 50% so although I fall within criteria at this point for a CI in this particular test, I did actually do really well and it proves that I am a very good hearing aid user. Yay me!

I then went to meet the CI team in the main hospital and all of a sudden got very nervous. My main worry was that they would tell me to stop being silly, you’re doing perfectly well as you are, you don’t fall into criteria at all and there is no way we’re going to give you a Cochlear Implant, all based on paper results only!

Of course I had nothing to worry about, they were absolutely lovely. And there is a lot more to giving someone a Cochlear Implant to looking at an audiogram! It was a little daunting walking into the room and seeing 6 people in there waiting for me but they soon made me feel completely at ease as they introduced themselves one by one. The main consultant asked me a few questions about my history and talked me through what they wanted to do to establish whether or not it was the right time for me to have a Cochlear Implant. I am to have a CT and MRI scan and to try some new hearing aids as well. He assured me that even if the decision in the end was that we do not go ahead at this point, I am on their books now and they will look after me and my hearing needs for the foreseeable future and the subject of a CI would be revisited again at another time. I would not be forgotten, that is the most important thing.

The main question that I had, at that point was actually quite a small one in the grand scheme of things, but a very important one to me. Ever since I “lost” the use of my Left ear, I have really struggled to find someone whether it be a ENT consultant, or an Audiologist, who understood why I refuse to wear a hearing aid in that ear. It seemed that they would only consider what they saw on paper which is that a hearing aid should benefit my Left ear and in actual fact, the Left ear is ever so slightly better than my Right. But what the audiogram doesn’t tell them is that as soon as I have a hearing aid in my Left ear, the quality of hearing I get is abysmal. Everything is distorted and muffled and it takes over any good clarity of hearing I do have left on the other side. In my case, quality is definitely more important than quantity.

I explained my concerns to the CI team and they immediately put my mind at rest. They told me that they did understand and that they have met many people with similar problems and they would never force me to wear a normal hearing aid in that ear if I didn’t want to. They really seemed to “get” me and for this, I was eternally grateful and left feeling incredibly positive and really looking forward to all the appointments that I had to come.

My next appointment was a week later on Tuesday 25th August 2009 with the Hearing Therapist. She was really nice and asked me a few questions initially about what I was hoping for from a Cochlear Implant. My answer ultimately is that I am really hoping for the use of some hearing in both ears again. I would like the CI in my Left ear and carry on using a hearing aid in my right. I am simply not coping as well with the hearing I have left any longer and would like a bit more of an easier ride.

She then explained to me a bit more about the CI itself. Where the electrodes are placed in the ear, and how it affects the cochlear (a CI provides hearing by skipping the Coclear after inserting the electrodes through it and therefore destroying said Cochlear) and what entailed in the operation. It would take place on a Tuesday morning, take about 3 hours and I’d be out by Wednesday. She showed me the three different types of CI’s that they offer made by three different companies (Cochlear, Advanced Bionics and Med-El – I hope I have these right!) and the differences between them such as the type of battery and the shape of the processor.

I asked her if she could tell me a bit more about why a CI works and would it work for my kind of hearing loss. She was so patient, I really appreciated the time she spent explaining what happens.

So, lets see if I can put it into words… The actual implant is what goes behind the ear, inserted under the skin during surgery. This is what receives the signals and sends them to the hearing nerves, bypassing the middle and inner ear and therefore anything that doesn’t work in there. The processor, sits on your ear like a normal hearing aid does and this connects to the implant. A magnet is used to keep the processor in it’s place. The fact that a CI completely bypasses the inner ear means that if you have a hearing loss due to a problem with your ear drum for example, a CI will not work. I found this incredibly interesting. If anyone reading this finds any inaccuracy with what I have said, then by all means please do say and I’ll edit. It’s quite hard to remember everything off the top of your head when there is so much other information you’re keen to keep hold of as well.

So, my widened vestibular aqueduct indeed does fall in the inner ear and therefore a CI would indeed work for me. The distortion that I get from my Left ear would not be present whilst using a CI as the hearing nerves that create the distortion (due to being damaged) would not be needed as they will also be bypassed. Big sigh of relief on my part.

I think it’s worth mentioning that I found it really interesting to hear that a CI does not always suit everybody with a hearing loss and can often suit people who have been deafened later on in life, or perhaps used a hearing aid, more than someone who has never experienced hearing any sounds at all since birth. This is because the CI uses the brain to interpret the hearing signals and if the brain has never received them before there can be a slim chance of it working as the brain will not know what to do with them. With children, it is generally advised to have the CI as early as possible, so that the brain can learn how to use the hearing signals it is receiving at the same time it is learning to do everything else naturally. It all does depend on the circumstances of the person involved though and I know this is taken into consideration on each individual’s merit. I know someone, very dear to me, who had a CI at the age of 50 after losing all her hearing at the age of 4 (if I have remembered correctly). That is some achievement and would have taken a HUGE amount of work on her part to train her brain into understanding sound as it will have been a long time sine her brain heard sound.

The Hearing Therapist continued to inform me that after the operation, some people find that their taste has changed, or perhaps a facial nerve is weakened but she assured me that these effects only last a couple of months at most. The big switch on, would take place about 4 weeks after the operation, the Tinnitus may get worse in the meantime, but should disappear or almost disappear as soon as the ear is in use again. She also told me that she would like me to meet someone who has recently had a CI, who is in a similar situation to myself hearing loss and lifestyle wise and to see how it worked out for them. I’m nervous about this as I’m not the most confident of people meeting strangers but I do agree it would be a really good experience to have.

So again, I left feeling incredibly positive and armed with information about the CI which is definitely A. Good. Thing.

A week later and I’ve returned to see the Hearing Specialist who fitted me with a new hearing aid. I won’t say much about this appointment as I pretty much covered it in my last blog post but she did explain a bit more about what they will be looking for.

Apparently there are a few areas of criteria that they will be looking at to determine whether a CI would be suitable for me or not at this point in time. The first is that my hearing loss is greater than 90 decibels and that I definitely fulfil. The second that I am aware of, is that I fall under 50% in testing for speech recognition without lipreading and in this test I got 42%. She explained that although they have to try every route before they decide whether to give me a CI or not, she doesn’t feel that there will be enough improvement with my new hearing aid to push me over that criteria boundary so her feelings were that I will be able to have one at this point in time. I will need to have a couple of specialist scans where they test my hearing with sensors on my head without me actually having to do anything (which sounds incredibly intriguing and I’m sure I’ll look quite funny!) and of course other factors are taken into consideration depending on my personal circumstances. But she did tell me that she will be pushing for me to have one sooner rather than later, I feel that perhaps I am being seen as an good candidate in that I would suit and use a CI really well. Here’s hoping.

The next appointment, later on this month will be a review with both the Hearing Specialist and the Hearing Therapist. After that I have my CT and MRI scans on the 2nd October 2009 which will provide valuable information to the consultant performing the operation. Time will tell if I’ll get one or not… I hope you’ll be waiting with me to find out!